This toolkit is primarily designed to assist health professionals in supporting young people and their families to transition to adult health teams. Transition should be personalised and holistic, and you may find the education and social care resources helpful when supporting young people to transition
You may initiate or be asked to contribute to Education and Health Care Plans (EHCP), social care assessments and NHS CHC assessments.
Transitions within education occur at different ages and may include a change of school, progression to college or leaving formal education; they may occur at times of concurrent transitions in adolescence and in their healthcare. The resources below provide guidance and tools for supporting young people through changes to their education and to improve opportunities for those that may struggle to attend in person.
For resources specifically relating to adolescence, please click here
Interactive tool to help Children with Palliative Care needs access Education Interactive online resource for Education providers in England, which answers questions about children’s palliative care in order to guide and inform the services they offer to ensure they meet the needs of seriously ill children and young people.
ActOnIT Schools Team: Onsite Advovacy Support for students in year 6 or above to equip them with the skills and techniques to improve their confidence and self-esteem and to better manage their own emotional wellbeing. Referrals should come directly from the school attend. If you feel a young person would benefit from the service, please contact the Head of Year at the relevant school.
The resources in this section relate specifically to Special Educational Needs and Disability, for other resources relating to individuals with Learning Disabilities, please click here (Learning Disability Resources). If a young person is thought to have a SEND, there are organisations that can offer advice and support:
SENDIASS Worcestershire and Herefordshire (hwsendiass.co.uk) Herefordshire and Worcestershire SEND Information, Advice and Support Service (SENDIASS) offer free, impartial and confidential information, advice and support. They can also help families navigate through the EHC (Education and Health Care) needs assessment process.
(IPSEA) Independent Provider of Special Education Advice This national organisation offers free and independent, legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs and disabilities (SEND).
Local authorities have duties to identify, and then address, the needs of any young person with Special Educational Needs and Disability (SEND) in their area. They must consider conducting an EHC (Education and Health Care) assessment if one is requested; this assessment will determine if Education, Health or Social Care support is needed and therefore an Education, Health and Care Plan (ECHP) is created. Health Care Professionals may be required to contribute to this plan.
Requesting an EHCP in Herefordshire: Children with Special Educational Needs and disability – Herefordshire Council
Requesting an EHCP in Worcestershire: Who to contact for advice and guidance (SEND Local - Offer) Worcestershire County Council
Herefordshire Social Care
Resources relating to Social Care in Herefordshire.
Social care and support (Herefordshire Council) Social care and support information from Herefordshire Council.
Welcome to Herefordshire Carers | Worcestershire Association of Carers (carersworcs.org.uk) Registered charity providing information, advice and support to carers in Herefordshire.
Worcestershire Social Care
Resources relating to Social Care in Worcestershire.
Worcestershire County Council Worcestershire County Council website.
Social care support for young adults with disabilities (Worcestershire County Council) Worcestershire Young Adults Team (Social Care support (including supporting transition to adult services) for young adults aged 16-25 with disabilities.
Worcestershire Association of Carers (carersworcs.org.uk) Registered charity providing a range of information, advice and support to carers In Worcestershire. You can refer a carer here - Refer a carer
Young people under the age of 18 may have very complex health needs, which may be the result of congenital conditions, long-term or life limiting or life-threatening conditions, disability, or the after-effects of serious illness or injury. These needs may be so complex that they cannot be met by ‘core services’, i.e. from GP practices, hospitals, or in the community commissioned by integrated Care Boards (ICBs) or NHS England. Young people whose needs can be met appropriately through existing universal or specialist services, through a case management approach will not meet eligibility criteria for CCC. CCC will usually be part of a wider package of care, agreed and delivered by collaboration between Health, Education and Social Care.
An NHS National Children’s Continuing Care Framework, which covers young people up to their 18th birthday, provides the supporting guidance and necessary tools for use in assessing eligibility, commissioning care packages and monitoring the effectiveness of the commissioned care.
Developing a multi-agency understanding of a child’s needs, and then agreeing a package of care, requires collaboration in the assessment process, and subsequent agreement as to who has responsibility for commissioning the different elements of that care package. CCC is concerned with the establishment and effective delivery of a care package - and these can take time to establish. It is not a clinical service or, often, something which can be mobilised at speed or in response to an urgent need.
Young People who require fast-track assessment, because of the nature of their needs (such as a palliative care), should be identified early and the young person’s needs met as quickly as possible. In these cases, the CCC process should not restrict access to End-of-Life (EoL) care for young people who require immediate support over a shorter period, and should not result in any delay to appropriate treatment or care being put in place.
The CCC process typically comprises of five phases:
- Referral/Checklist: This is used to indicate if a young person is likely to be eligible for CCC and to determine whether a full assessment is necessary.
- Assessment: The assessment is led by a children’s and young people’s health assessor who will draw holistically on the advice and evidence from other professionals, which includes health assessments such as (but not limited to) OT, Physio, SALT, together with specialist input from Social Care, and Education. In addition, the family, and, where appropriate, the young person must be involved in every stage of the process. The assessor will collate all the relevant information and complete the full assessment. Once completed the assessor will make a recommendation as to the young person’s eligibility. The completion of the assessment is not a guarantee of eligibility for CCC funding and may lead to a conclusion that the young person's needs are being met by existing services, such as community nursing, or existing commissioned paediatric services.
- Decision: All decisions are taken via a multi-agency forum or panel which must fully consider all of the evidence alongside the assessor’s recommendation, in order to reach a final decision as to whether or not the young person has a CCC need. The Herefordshire and Worcestershire panels are each held monthly. If urgent decisions are required then these can be considered, exceptionally, out of panel.
- Development of a package of care: Commissioners will decide how the CCC will be provided, what proportion and level of resource is required to deliver it, and how much needs to be specially commissioned (i.e., how many hours of care each day/week are appropriate to meet the assessed need), taking into account the recommendations of the assessor and the young person. Costed options may need to be separately considered by a funding panel. These options should always be considered after a decision has been made on whether there is a CCC need. Commissioners are responsible for establishing and managing appropriate governance arrangements for all packages of care.
- Review: Commissioners will ensure that all commissioned packages of care are reviewed in line with the NHS CCC Framework. This is to ensure the developing young person’s needs continue to be supported over time and to reflect any changes. Any package of care which an ICB agrees should be integrated or aligned with other relevant services, such as primary care. Packages are to be reviewed as a minimum, 3 months after commencement, at 12 months, and annually thereafter but may be reviewed at any time if there is a change in need or circumstance.
Many young people provided with CCC will remain dependent upon others for all their care throughout their lives. The aim of providing care for this group is to enhance their quality of life and empower and support their families / carers to manage and understand their conditions and situations. For those young people with the capacity to develop independence, the aim of CCC should be to support the move from dependence to independence, with young people being enabled to manage their condition themselves with a full understanding of any relevant implications.
Once a young person reaches the age of 18, they are no longer eligible for Children's Continuing Care (CCC), but may be eligible for NHS Continuing Healthcare (CHC), which is subject to alternative legislation and specific guidance. It is important hat young people and their families are helped to understand this and its implications right from the start of transition planning. Future entitlement to adult CHC should be clarified as early as possible in the transition planning process, especially if the young person’s needs are likely to remain at a similar level throughout adulthood. This should be accomplished by undertaking an initial screening for CHC when the young person reaches an age of 17.
There are significant differences between young people’s CCC and CHC for adults. Although a young person may be in receipt of a package of CCC, they may not be eligible for CHC or NHS funded Nursing Care, once they turn 18. Every young person with a package of CCC who is approaching adulthood should have a multi-agency plan for an active transition process to adult or universal health services or to a more appropriate specialised or CHC pathway.
Approximate timetable for transition:
- At 14 years of age, the young person should be brought to the attention of the CCC team (if not already known to them) for consideration of an assessment for CHC.
- At 16 -17 years of age, screening for CHC should be undertaken, using the adult screening tool, and an agreement in principle as to whether the young person has a primary health need and is therefore likely to need CHC. A full eligibility assessment will take place prior to their 18 birthday.
- At 18 years of age, full transition to adult CHC or to universal and specialist health services should have been made.
After 18, CHC is a package of ongoing care that is arranged and funded solely by the National Health Service (NHS), where the individual has been assessed and found to have a ‘primary health need’, as set out in this National Framework. Such care is provided to an individual aged 18 or over, to meet health and associated social care needs that have arisen as a result of disability, accident or illness. The actual services provided as part of the package should be seen in the wider context of best practice and service development for each client group. Eligibility for CHC is determined by assessed need and not by the setting in which the package of support can be offered or by any diagnosis.
NHS continuing healthcare (www.nhs.uk)
nhs-continuing-healthcare checklist Initial checklist assessment issued to decide if a full assessment is needed for CHC.
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